MS Diagnosis Journey “When your legs go numb”

My MS Diagnosis Journey officially began in November 2007 when my GP confirmed the results of my very first MRI were indeed “text book Multiple Sclerosis”. This was only the official beginning of my MS journey as I had been experiencing health issues for quite a few years that in hindsight, seem to be related to MS.

My MS Diagnosis Journey

We all have an MS diagnosis story and interestingly, when you meet and speak with other people, their MS Diagnosis Journey story can vary or you may find it similar to your own experience.

For me, I was 32 years of age, a newly wed having tied the knot only a few months earlier. I was working at a fitness club as a Member Care Manager and my role was to ensure our members were getting the most of their membership. Unfortunately, it also included dealing with the unhappy members who were wanting to leave so I got to hear many excuses, complaints, self imposed limitations.

The bonus of my job was being surrounded by fitness, health and wellness. We had staff Personal Training sessions once a week, I participated in lots of group fitness classes, was the fittest and healthiest I had ever been. I was even starting to enjoy jogging for the first time.

Physically, life was great!

Mentally, I was not the greatest at handling stress – I took a lot of things personally and to heart, a trait which I have carried with me most of my life and it did not serve me well.

24th March 2007 – 6 months before the MS Diagnosis Journey begins

It was September 2007 when I had been jogging away happily on the treadmill during my lunch break. That night, sitting in bed reading a book I had this strange feeling… my legs were tingly like when you get pins and needles except, when I jumped out of bed to wake them up, they wouldn’t. This was concerning.

The next day I phoned my GP only to learn he was away sick and I was unable to see him that day. SO, I looked up another GP and made the quickest appointment I could, bursting into tears. When I saw him, he wrote me a referral to have an MRI. He suspected the cause of my numbness and tingling to be one of two diagnoses; a tumour on my spine or MS.

MRI and the waiting for results and answers

Going through tests and waiting to hear the diagnosis of what is wrong, can be a long, tedious, worrisome time for anyone going through a health crisis. Looking back years later and having spoken with and read the stories of others who have gone through this, my MS diagnosis time-frame was quite small. Some people never seem to get answers and are left hanging for weeks, months, even years. Some never get answers.

I had some delays. First one being the MRI machine broke and I had to come back another day. Given the numbness happened in late September and I wasn’t told my diagnosis until early November, it was about a six week process.

MRI’s are interesting experiences. Thankfully, I’m not one to experience claustrophobia and I’ve never had to undergo the dyes others have. I HAVE had little flying insects come into the machine and try and tickle my nose when I’m trying to remain still. For me, I tend to relax and allow the sounds of the machine to relax me in a meditative way, strangely enough?. I remember those first couple of MRI’s I would lie there and wonder what the noises all meant, where the machine was looking, or I’d make up some sci-fi kind of story in my mind to pass away the 25-45 minutes cocooned in a tunnel.

When the results came in, I learned it wasn’t a tumour on my spine and I was so very grateful for this. Despite all the Google research I had been doing in the weeks leading up to getting my MRI results, being diagnosed with MS was a relief for me as it meant I wasn’t dealing with the big “C”.

I’m Diagnosed with Relapsing Remitting MS, so what comes next on my MS Diagnosis Journey?

Tears, crying myself to sleep, weighing up a future that is numbness and a big question mark over my head as to what this MS will throw at me. Looking at the past health issues and seeing patterns that are red flags to my MS that were not diagnosed.

Realising the tiredness and fatigue over recent weeks wasn’t just working hard and the urge to pee at the drop of a hat had more of a reason for being…

That the bowel issues I’d been tested for in the past may have just been MS…

That the carpal tunnel I was conduction tested for two years earlier was my first noted MS Diagnosis documented event. MS diagnosis almost always requires two stand out events. My first being my left arm going weak and achey, along with some anxiety attacks and fatigue.

Things that make you go, “Hmmmmm?”

A List of Activities in those early days, weeks, months of my MS Diagnosis Journey:

Going to the neurologist, getting a poked and prodded and tested some more.

The MS Nurse phone calls and appointments to be shown how to inject Copaxone

Peer support network

Newly diagnosed emails and fact sheets

Going to my first Support Group

Joining online MS chat rooms

Finding a place to learn meditation to help me relax

contemplating psychologists and anti depressants for my mood

So much happens, so much to comprehend, a lot of overwhelm, grieving, adjustment.

It is no wonder many of us end up feeling anxiety and even the black hole that is depression. Both common MS experiences.

Anxiety and Depression are two of my biggest symptoms before and after being diagnosed with MS – conditions I had experienced throughout my life, particularly in my twenties.

Being newly diagnosed, in my experience, was one of my most vulnerable times in my life and looking back – I can see I tend to forget just how vulnerable a time it was. My MS Diagnosis Journey has been such a catalyst for positive change in my life changing me, changing how I live my life for the better.